Data Medicaid Medicaid/Medicare Medicare

Did President Biden backtrack on his pledge for increased public access to Medicare data?

The Biden Administration promised more access to Medicare data. Then the reverse happened. ProPublica explains:

In January, the Biden administration pledged to increase public access to a wide array of Medicare information to improve health care for America’s most sick and vulnerable. Some Medicare plans’ lack of transparency “deprives researchers and doctors of critical data to evaluate problems and trends in patient care,” said Xavier Becerra, the secretary of health and human services, in a statement.

So researchers across the country were flummoxed this week when the Centers for Medicare and Medicaid Services announced a proposal that will increase fees and diminish access to claims data that has informed thousands of health care studies and influenced major public health reforms.

CMS describes the changes in detail on its webpage titled “Important Research Data Request & Access Policy Changes“.

I recently signed the open letter to CMS arguing for the need for physical access to CMS data, not just via Virtual Research Data Center (VRDCs). The text of the letter begins as follows:

Administrator Brooks-LaSure,
We write this letter on behalf of over 375 academic researchers spanning over 75 institutions across the United States in response to the request for information titled ‘Research Data Request and Access Policy Changes’ issued on February 12th, 2024. The policy changes proposed here, especially those related to the decision that “CMS is discontinuing the delivery of physical data extracts in support of external research projects,” are incredibly detrimental to public health and scientific progress in the United States.
We all believe that CMS data is one of the essential resources we have for studying and helping improve the health of this nation. Our colleagues at Yale have compiled an
excerpt of the influential work done with these data. Many of these works were led by scholars in training and junior faculty.  
However, we believe that the proposed changes in the Research Data Request and Access Policy will put the future of such research in jeopardy, erode academic freedom, directly harm Medicaid and Medicare beneficiaries’ access to and quality of care, hamper the Administrator’s ability to protect the trust fund, and frustrate the agency’s rulemaking toward the goals mentioned above.
Physical access to these data is critical for developing the evidence needed for continued progress, transparency, and accountability of the healthcare system across critical issues such as health equity, health access, healthcare quality and safety, hospital consolidation, financialization in the healthcare sector, drug pricing, among many other critical federal policy priorities.

The unavailability of physical data from Medicare and Medicaid through the Centers for Medicare & Medicaid Services jeopardizes the accountability of the entire healthcare system in the US through research that needs to be rigorous, reproducible, and conducted with academic freedom. It also compromises the practical training of future scholars in our field by stripping away data access for hundreds of institutions and researchers, obliterating hundreds of thousands of dollars invested in research infrastructure and data at each institution, and putting an end to critical research that is necessary for the continued evidence-building and improvement of healthcare delivery in the United States. Dampening the research and training of future scholars will directly translate into Medicaid and Medicare beneficiaries missing out on improvements in health care driven by this research. It will disproportionately dissuade research by and training of scholars from disadvantaged backgrounds and institutions. It risks threatening the health of the CMS beneficiaries and the viability of the Medicare trust funds in the long run…

The full letter is here. Thanks to Anirban Basu for organizing the letter.